Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

Lost In Translation

“Mei wen ti”.  The Chinese Pinyan expression does not ring a bell to you?  How about, “Hakuna Matata?”  You do not need to have had children to have heard this expression from the Disney classic, “The Lion King,” Pumba the wart hog sings, “it means no worries for the rest of your days, it’s our problem-free philosophy.”

“Mei wen ti” may not have the familiarity of Hakuna Matata, but it most certainly is the way of life that I strive every day to maintain.  You may also have heard of the serenity prayer, and I am paraphrasing, “give me the strength to accept the things I cannot change, the courage to change the things that I can, and the wisdom to know the difference.”

I keep coming back to “Mei wen ti.”  Why?  Because of all the challenges in life that I have faced, too many to list in this post, those three words, “Mei wen ti” changed my thinking and way of life forever.

I first heard “Mei wen ti” at a hotel in Hong Kong.  I had just landed in Hong Kong to adopt my daughter, a blessing from China.  I handed my credit card to the desk clerk to pay for my overnight stay.  Before I left, I notified my bank, a small credit union, that I would be travelling overseas, so that they would not suspect anything with my credit card being used in China.  And then I heard…

“It was declined,” said the clerk.

I told the clerk to try again.  I knew it was working.  I knew there was zero balance on when I left for the airport the day before.

“Sir, it is declined again.”

Beginning to panic, I urged the clerk to try again.  There has to be a mistake.

Our guide for this part of the trip, Ben, came over to me, asking what was the matter.

I told Ben, that my credit card was being rejected and I had no idea why.  I had only enough cash for some expenses during our two week trip, and still needed to pay for hotels and in country flights to finally meet my daughter.  Impossible without that working credit card.

“Mei wen ti.”

I said, “excuse me?”

Ben repeated it.  “Mei wen ti.”

Now completely baffled, as I do not speak Chinese, I shouted, “what the hell does that mean?”

Ben translated, “it means no worries.”

Oh my God.  You have to be kidding.  Does he not understand English?  I hear him speak it.  But I just got done explaining my problem, and all he can say is “don’t worry about it.”

Ben continued, “we are coming back to hotel in fourteen days.  You take care of bill then.  Mei wen ti.”

Ben really did not understand.  I had no working credit card, and I was on the other side of the world.  All he could do was tell me not to worry?

Later that morning, we took the flight to the province where my daughter lived.  We met our guide for that part of the trip, De.  I began to explain my problem, and only got as far as the beginning before he interrupted, “mei wen ti.”

What the hell is it with this “mei wen ti?”  I have a real problem here, and some quirky Chinese expression is not going to get my credit card working.

As we arrived at our hotel in the capital city, my turn came in to check in, with no credit card, and not enough cash to pay.  De joined me at the counter, looked at me and smiled, “mei wen ti.”  While I felt like blowing a major gasket at that moment, in just that instant, De pulled out a credit card, and said something to the clerk behind the desk, which I assume, was informing the clerk that De was accepting responsibility for the room until I got my credit card mess figured out.

De turned to me again and smiled.  “Mei wen ti.”  This time, emotionally choked up, I repeated, “mei wen ti?”  De said, “go take your bags upstairs and come downstairs right away.  It is time to meet your daughter.”

With a thirteen hour time difference, and a turtle-slow internet connection, over a weekend no less, four days later, the problem with my credit card was resolved and by the time it was to check out, I was able to pay my hotel bill.  Now, I just had to worry about the hotel in Hong Kong which would now be done.

Mei wen ti.  I could have worried myself into a frenzy, and all that would have happened in a foreign country, at the least could have led to an international incident with an American going berserk.  Instead, the kindness of two strangers, and three words, spoken in Chinese, taught me a new way of dealing with things that were beyond my control.

Mei wen ti.

Remembering Nancy

Though I never asked her how old she was, I know Nancy was close in age to me, graduating from high school in the same year as me. Her daughters are slightly older than my daughters. She was a fellow long term survivor of Hodgkin’s Lymphoma, like myself. Also, similar to me, she dealt with a lot of serious health issues related to her treatments for her Hodgkin’s. That is where the similarities will end however. Last week, as has happened with so many other of my fellow long term survivors, Nancy passed away, apparently suddenly. It had been oddly noticed by several of us, that she seemed to be going about her day (as normal as she was able to), as she completed her “Wordle” puzzle and posted her results.

Some time after that, I had begun receiving messages about Nancy’s passing. Clearly, all of us shocked and saddened by someone who not only had so much to offer, but gave everything she could to help all of us. I never got to meet her in person, but she had always offered support to me with all of the surgeries I had faced in recent years, and of course, encouragement through my divorce.

Besides the comfort of knowing that Nancy is no longer struggling with the health issues from her Hodgkin’s past, there is an unbelievable outpouring of kind words being offered by so many, fellow survivors, friends, and family who truly tell the story of who Nancy was, and what she meant to all of us. I would like to share some of those comments (presented with anonymity for privacy reasons).

“So kind and generous…”

“Her legacy will live on through her advocacy…” (besides being involved in peer support with fellow survivors, Nancy was a board member of Hodgkin’s International, a non-profit dedicated to education, advocacy, and support for patients and survivors of Hodgkin’s Lymphoma)

“Someone like me…who understood (what we go through as long term survivors)…kindred. Her faith and patience and wise words calmed my mind and heart often in tumultuous times.”

“A strong spirit… wonderful outlook on life.”

“Grateful for the gift of her in our lives.”

“A beautiful friend.”

“She was good at keep track of us…”

“A big loss for our community.” (her participation on our support pages was invaluable and irreplaceable)

There are literally hundreds of kind and beautiful words and sentiment being offered for Nancy and her family. The grief of her fellow survivors and friends can only mirror in comparison to the family that knew her best and forever in their hearts.

To my fellow long term survivors, each survivor that passes is hard. The upside to having been blessed to know Nancy and having been touched by her kindness and support, is that when the time came, we feel the loss, and yes, we find that we too, may question our longevity. But if there is one thing that we can not only remember Nancy for, but honor her, in that we need to continue what we do every day, for every day that we get to have. Sure, we know the many circumstances we must deal with, but Nancy showed that we can also enjoy life each day, one at a time.

Chasing Mortality

Ernest Hemingway once stated, “write drunk, edit sober.” While Hemingway definitely liked his drink, there is nothing to indicate that he ever wrote with this strategy, referred to today as “having no filter.” The concept is intentional. Take what you are trying to write, remove all inhibitions, and just let loose with your thoughts, organize them later. As a writer, I can have several thoughts in my head at once, and unless I make a note of them all, I will lose at least 25% of them. But with all the thoughts written down, the mind now “empty” or sober, everything can be arranged and edited to make better sense.

I am not writing drunk today, though I may attempt Hemingway’s strategy at some point just as an experiment. But my post still may seem scattered and unorganized today, unfiltered. There will be no editing or “sobering” up. The truth is, I could not be any more clear of the thoughts in my head right now.

I was in the middle of writing a different post, one of reflection, a period of time that has now come full circle for me (and I will finish that post eventually), when the news came across my feed, that a fellow long term survivor of Hodgkin’s Lymphoma had passed away. As I have done for others that I knew, I will post a tribute for her soon. But rather, this post is about the impact her passing has on me, and the many thoughts running through my head.

I believe she was younger than me age-wise (a gentleman never asks) based on the fact that she had children approximately the same as I have (and I started late). But I do believe she was one of many who are ahead of me in survivorship years. As survivors, we shared the circumstances of having to deal with late side effects from the treatments that cured us of our Hodgkin’s. Some of these issues were similar, others were different. The fact is, the news came this morning suddenly, as if unexpected. How can I say that with any amount of certainty? While she was actively dealing with some health issues, and had issues related to her cause of passing, neither seemed of imminent concern at least to some of her fellow survivors. But yesterday morning, as she was known to do every day, she shared her “Wordle” score. Some time after, she passed.

To put my experience in perspective, I have spent nearly all of my 32 years of survivorship, supporting other survivors. Over that time, I have seen having nowhere to turn to for help with our issues to finally having medical resources but limited enough that still too many cannot get the help they desperately needed. Today, there is an actual organization dedicated to support of Hodgkin’s patients and survivors, called Hodgkin’s International, and it really is international in its reach. Not the American Cancer Society, or the Leukemia and Lymphoma Society which are more popularly known which where we survivors are basically ignored, but Hodgkin’s International is finally getting the word out, and the support we have been waiting to have, for decades.

My first experience with survivors passing, came early on. Survivors having these “unusual diagnosis” for someone our age, not necessarily connecting the dots between survivor late effects and what someone was dealing with. Because of this ignorance, some were left unprepared for complications that would arise from even the simplest of procedures like a routine colonoscopy.

Then as the years went by, and more of us began sharing our experiences, enabling us to advocate and educate the doctors we were dealing with, that they were not taking care of a text book patient. If we were lucky, our concerns were listened to. But even if they were listened to, in spite of a surgery or procedure being successful, a last minute turn such as an infection, led to sudden tragic endings. My fellow survivor Peter Perin of New York was the first patient who suffered this fate, and became my reference point, to any doctor that treated me. “You must be prepared for anything, including sudden infections.”

Again, more time has passed. More of my survivors are finding the help they need. Sadly, there are still so many more that do not. But with all the peer to peer support, to share with doctors, at least we are able to advocate for our care, which I believe is contributing to further survival for many of us. Still, if you have followed “Paul’s Heart” long enough, I still say goodbye to so many more.

Which brings me to the final phase of my survivorship at least, when the body just cannot take anymore. Up until last year, I believed survivorship was just a matter of going to doctor appointments, getting our ticking time bombs fixed or monitored, and advocating for ourselves. Sometimes, our bodies just decide it is time. No matter how much we try to prevent, fix, prepare, ultimately, when the body says “that’s all she wrote,” that is it.

Last year, one of my closest survivors of three decades passed away suddenly. She had plenty of issues that she had to deal with, but overall, no one was expecting her to pass away on a day that had different plans, lunch with friends. Yesterday, another survivor, in similar health, suddenly passed.

I have made a huge deal over the last two years about my concerns and mitigative efforts in avoiding Covid19, the efforts to see my children as much as I can, and really just enjoy life. Because, although many feel that me knowing my odds, and living my life based on those odds, is being a negative person, it is really quite the contrary. I have so much to live for, so much more that I want to do. And no matter how diligent I am with my care, my ride could be over just like that. If I can be arrogant at all, it is with this thought, my time will go on, it is not my time to pass on. I will let my body know when it is time.

In reality, I know it does not work like that. Boy do I know that. But I will continue to take care of my late side effect health issues. I will relish every moment I get to spend with my daughters. I will follow the recommendations of scientists who are doing the best they can to get us through this Covid19 crisis, about to flare up again. These are the things that I can do.

To quote Danny Devito from his character “Eddie” in Jumanji: The Next Level, “getting old is a gift.” Yes, I am aware of the things that have been, and are happening to my body. And they are not good. But I go through every day, with the intention of doing all I can to see the next tomorrow, which I know is up to my body to decide, and each day is the best gift I can give myself.

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